The too muchness of it all
My daughter has Aspergers. It doesn’t matter that we don’t have a slip of paper with the words on it yet, I know.
An official recommendation is made for assessment by an autism team and while I’m coping, it’s all a bit much.
She bounces off the walls, sensory seeking, frantically jumping and leaping and running and falling and laughing too loud and too hard for too long. She avoids my eyes and runs away and hugs me like the world is ending, clinging to my shoulders, trying to scale me like a jungle gym.
I drag her outside to jump on the trampoline and run and swing.
It helps.
For a while.
The sun shines brightly, but the wind is cutting and while she doesn’t feel it, I do and I shiver as I push the swing.
We check for eggs, she races around, she falls over and laughs.
I read about autism and aspergers and remember Amy’s first year, a first year I’ve blocked out for my own sanity. A year of screaming, of arched backs, of refusing to be consoled, to breastfeed, to play.
***
My son screams the scream of a frustrated toddler. He has wants and needs and I’m not meeting them fast enough.
8 hours of tantrums later, a small giggle escapes him as I take time to tickle him.
Two white points pushing through his top gum, two angry swellings on the bottom. Teeth. More of them.
His tantrums continue, interspersed with happy chats on my lap.
My head aches.
***
My partner hurts his back and tries to drive me to an appointment the day afterwards.
Half way to the city, his back seizes and he pulls over, stuck, screaming, in pain.
20 minutes later an ambulance takes him to hospital, leaving me and the children behind, on the side of the road. Stranded; I don’t drive.
My father-in-law and brother-in-law rescue us. I’ve never been so relieved to get home.
My partner makes it home later that night, a prescription of painkillers in his hand.
A week later he still can’t walk much, or move, or help around the house.
***
It’s too much when my daughter bounces and screeches and my son screams and my partner winces and it feels like all the balls are up in the air, waiting to fall in a heap.
It’s too much.
And while I know it will be okay and our families are helping lots, it doesn’t help when I’m on my tenth tantrum and my eighth meltdown and no one can help.
I’m overwhelmed and planning on spending a week in bed when this particular hell ends.
With chocolate.
A lot of chocolate.
Not numb
Poke poke.
Does that hurt?
No.
I think it’s meant to hurt.
Poke poke.
Nothing.
There’s meant to be something there. I’m meant to feel something I’m sure.
A yawning chasm opens in my soul and swallows my emotions. I’m not anxious anymore, but I’m not happy or sad or angry either.
I don’t like this. I’m meant to feel something when I poke there.
The numbness spreads like anaesthetic and I ignore it, repeating to myself it’s for the greater good like a mantra. A fortnight later I stop the drugs and shockingly; amazingly, my emotions flood back in and things look sharper, brighter.
Poke poke.
Does that hurt?
Oh yes. Oh god yes that hurts.
I’m back and I can write again.
Falling apart
I fell apart, broken and sobbing while the clock ticked down, stopped and then nothing.
I looked around.
Is that it? Is this all?
And it was. The year of firsts finished, not with a bang or a crash, but with a fizzle. A slight smell of burning fills the air.
++
This time last year I was … I stop.
Fill in the gaps.
I was shocked, exhausted and broken. I was stressed and fucked up.
I was changed.
++
Some women buy shoes, some buy clothes, some buy chocolate and others buy nothing.
I buy books. I buy other worlds to lose myself in, fantasies and other people’s pain. I buy lives and seep into them as I leave myself behind.
It’s a coping mechanism, but there are worse ones to have.
++
They adjust my painkillers and prescribe me something to help me sleep. I spend three days stoned before deciding to halve my dosage tomorrow and see how I feel. I can put up with a little pain in order to have this fog lift, to make my hands remember how to type. I’m swimming through treacle and somewhere out there, the colours are brighter and the world is sharp. But not here. Here there is fog and headspins and drugs.
Tomorrow will be better. Being stoned is a nice way to leave the pain behind and swim through unthinking, but it’s not conducive to thinking or writing or parenting. I want my clear head back – I want myself back.
I tell myself that there is always a learning curve involved in new meds and new doses, but I still feel ashamed of how I feel.
I didn’t mean to do this to myself.
That’s what they all say.
Keep repeating it. Tomorrow will be better.
++
My bookshelves fill up and I wonder how many more books I can buy before we’ve got no room for them.
Lots I hope.
Clocks ticking
When I wake up, colour has disappeared. A phone ringing cuts through my sleep, but being only my mobile, I ignore it. You can do things like that when the world is frozen and your phone takes messages. Slowly my children surface and I throw open the curtains to reveal a world frozen, icy white.
No colour for me. Not today.
It’s the kind of weather that seeps into your bones and sinks fingers into your soul.
Frozen pipes herald the middle of winter, when you turn the tap and nothing but icy air appears.
Even as I warm up and the world defrosts, I feel frozen inside.
***
It’s like a clock ticking.
tick
tock
tick
tock
Twelve months ago she was alive still.
Twelve months ago we had nine days left. We didn’t see the countdown hanging over our heads, hiding just out of sight. We didn’t see it then, but I see it now.
***
I sink myself into my archives from June last year.
I survived that.
How did I survive that?
My body takes over and leaves me moving, one step at a time.
Don’t think, don’t count, don’t look at the calendar. Turn the music off, pull your eyes away from there. Don’t listen, don’t feel, don’t think about it. Keep your eyes focused, smile, laugh, your mind can’t go where you don’t send it. Be matter of fact, keep your practicalities. We need more sugar, who spilled the milk, where did that nappy go? What’s for dinner, who’s peeling potatoes, can I have a hand? Amy get down, Isaac shush, Mummy needs a moment. Don’t think, don’t look, don’t make any sudden movements.
We can do this.
One step at a time.
tick
tock
tick
tock
One step. And then another.
We’re moving closer and I’ve forgotten how to breathe.
***
What was I doing twelve months ago?
You were surviving.
How?
I don’t know.
***
Life is hard.
No wait, scratch that.
Living is hard.
But it’s also beautiful.
This June
This June,
I would like to come out the other side intact.
I would like to manage to stave off my broken-ness.
I would like to come through whole and okay.
Because,
last June
I didn’t.
And I can’t fathom doing that again.
Last June,
I ended up broken
and tired
and sad.
Last June,
was like being hit by a train
repeatedly.
And some things haven’t healed,
and some people haven’t been forgiven.
And they won’t.
Because
wow
that was low.
and I’m broken,
because I can’t scream the words at you I want to
and because I can’t talk about it any more.
So this June,
I want to come through whole.
I don’t want to feel kicked when I am down,
or strung tightly like a bow string,
choking on what I want to say,
but am too polite to.
This June,
I want to be okay.
And I want to tell you,
to go fuck yourself.
You’re not a nice human being.
And it’s your fault I can’t cry and it’s your fault I can’t talk anymore.
Because I want to tell you.
And I can’t,
because you don’t need to hear it.
Because being kicked when you’re down isn’t fun.
And aren’t you glad I’m not like you.
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